curious

[Guest guest]

My husband was diagnosed with PD in 2009 and was recently diagnosed with LBD.

He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

C

[Guest guest]

:

My sister(age 62)started exhibiting obvious symptoms in her early fifties and,

as we've learned since, she had some precursors as early as age 35. My father

(deceased in 1996) didn't show any of his until he was in his seventies. My

brother (age 52) started exhibiting his PD symptoms in his early fourties.

Some of our support group members spouses exhibited their symptoms in their

fifties. Although it is considered a disease of the aged, many have onset

earlier.

Helen

>

> My husband was diagnosed with PD in 2009 and was recently diagnosed with LBD.

He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

>

> C

>

[Guest guest]

Thank you, Helen. I'm was trying to determine a timeline for when I'm going to

need help etc. I know the average lifespan with LBD is short, but it seems as

though the age of onset makes a difference in that.

 

C

 

________________________________

To: LBDcaregivers

Sent: Saturday, December 24, 2011 12:26 AM

Subject: Re: curious

 

:

My sister(age 62)started exhibiting obvious symptoms in her early fifties and,

as we've learned since, she had some precursors as early as age 35. My father

(deceased in 1996) didn't show any of his until he was in his seventies. My

brother (age 52) started exhibiting his PD symptoms in his early fourties.

Some of our support group members spouses exhibited their symptoms in their

fifties. Although it is considered a disease of the aged, many have onset

earlier.

Helen

>

> My husband was diagnosed with PD in 2009 and was recently diagnosed with LBD.

He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

>

> C

>

[Guest guest]

Hi My name is Freda, My mother just turned 82 on nov 27 she has never been sick

and takes no meds ever. She started having halluncination on dec i, 2011 and was

hospitalized on Dec2 for diagnosis and possible treatment.  Because I did not

know about the no-no drugs with lewy body She was kept on psych. meds. She now

has been on hospice since wed and she is being allowed to die. We did not want

this and we are trying to fight it and have her taken to another research

hospital.  I hope your case turns out better for my mom it didn't because I was

not aware of the drugs that she should not be given. It has been 21 days since

diagnosis

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Sent: Saturday, December 24, 2011 8:56 AM

Subject: Re: Re: curious

 

Thank you, Helen. I'm was trying to determine a timeline for when I'm going to

need help etc. I know the average lifespan with LBD is short, but it seems as

though the age of onset makes a difference in that.

 

C

 

________________________________

To: LBDcaregivers

Sent: Saturday, December 24, 2011 12:26 AM

Subject: Re: curious

 

:

My sister(age 62)started exhibiting obvious symptoms in her early fifties and,

as we've learned since, she had some precursors as early as age 35. My father

(deceased in 1996) didn't show any of his until he was in his seventies. My

brother (age 52) started exhibiting his PD symptoms in his early fourties.

Some of our support group members spouses exhibited their symptoms in their

fifties. Although it is considered a disease of the aged, many have onset

earlier.

Helen

>

> My husband was diagnosed with PD in 2009 and was recently diagnosed with LBD.

He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

>

> C

>

[Guest guest]

:

The age of onset has some bearing on the life expectancy, but I believe that

early diagnosis and aggressive treatment have more.

Since we had previous knowledge of the disease with our father, we were able to

recognize symptoms in the earlier stages and we sought out some of the best

specialists in Northern California. From there, we worked with them to

coordinate an exercise program for her along with high doses of her cognitive

medications and supplements. We were lucky that she has been able to tolerate

them much better than many. We have a coordinated team that include her

neurologists, a neuropsychologist, an opthalmologist, a physical therapist and

her primary care physician all working together to give her the best quality of

life and safety.

After 3 - 4 years of higher quality of life, we are currently seeing her

symptoms breaking through all these efforts. We will continue to fight it, but

we've reached the point where we are actively hiring caregivers as we see her

changing rapidly.

Good luck .

Helen

> >

> > My husband was diagnosed with PD in 2009 and was recently diagnosed with

LBD. He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

> >

> > C

> >

>

>

>

>

>

[Guest guest]

Thank you, Helen. My husband has always been very fit. He still runs 6 miles a

week and works out with weights etc. He was first diagnosed with PD--as many

are--and the doctor hasn't changed his diagnosis, he just recently added LBD. I

never thought my husband had PD as my father had it for 22 years before my

husband was dx and I know PD very well. My husband's physical symptoms haven't

really declined, just his thinking etc.

 

We started Exelon about 2 weeks ago and we've seen some improvement, however I

see new symptoms popping up on a regular basis. For instance, lately

he's started snapping at me over the silliest things. That's not like

him. He's on Azilect which is a new med that is supposed to slow down the

progression of PD and hopefully LBD. We'll see.

 

Our main concern is that we have to move into the retirement community while he

is still capable of taking care of himself and I don't know how long we have to

do that.  I wish I had a crystal ball. It would make all of this easier.

 

C--Husband dx with PD at the age of 56, dx LBD at 58.

 

________________________________

To: LBDcaregivers

Sent: Tuesday, December 27, 2011 1:40 AM

Subject: Re: curious

 

:

The age of onset has some bearing on the life expectancy, but I believe that

early diagnosis and aggressive treatment have more.

Since we had previous knowledge of the disease with our father, we were able to

recognize symptoms in the earlier stages and we sought out some of the best

specialists in Northern California. From there, we worked with them to

coordinate an exercise program for her along with high doses of her cognitive

medications and supplements. We were lucky that she has been able to tolerate

them much better than many. We have a coordinated team that include her

neurologists, a neuropsychologist, an opthalmologist, a physical therapist and

her primary care physician all working together to give her the best quality of

life and safety.

After 3 - 4 years of higher quality of life, we are currently seeing her

symptoms breaking through all these efforts. We will continue to fight it, but

we've reached the point where we are actively hiring caregivers as we see her

changing rapidly.

Good luck .

Helen

> >

> > My husband was diagnosed with PD in 2009 and was recently diagnosed with

LBD. He's only 58. I'm wondering if there are others on here who had a spouse

diagnosed in their fifties. I know 's wife is the same age as my husband,

but I wondered if there are others who've been hit at such a young age (even if

their spouse is older now)

> >

> > C

> >

>

>

>

>

>

[Guest guest]

, my husband was also dx with LBD in his fifties. In 2008 he was dx

with PD but not agreeing with this dx I took him to another neuro in Jan

2009 and he dx him with LBD. He was 56. He has been on a steady decline

ever since. He can no longer walk by himself or feed himself anymore. I

honestly believe that had it not been for this group and their wisdom,

my husband would have died by now for the drs here did not know what to

do for him.

Darlene in SC

[Guest guest]

Thank you, Darlene. I've been wanting to compare notes with someone dealing with

this in my husband's age group. My husband was dx with PD in 2009 and just dx

with LBD a few weeks ago. He was also 56 with his initial dx, however, we spent

a year going to doctors before his dx because no one knew what was wrong. My

husband is very fit. He runs 6 miles a week and lifts weights etc. Physically,

he has not really declined, but mentally it seems to be progressing rapidly. He

recently started Exelon and we've seen some improvement, but not much. Was your

husband fit at the time of dx? Is he on Exelon or something similar? Anything

you'd like to share would be greatly appreciated.

 

C

 

________________________________

To: LBDcaregivers

Sent: Friday, December 30, 2011 4:08 PM

Subject: Re: curious

 

, my husband was also dx with LBD in his fifties. In 2008 he was dx

with PD but not agreeing with this dx I took him to another neuro in Jan

2009 and he dx him with LBD. He was 56. He has been on a steady decline

ever since. He can no longer walk by himself or feed himself anymore. I

honestly believe that had it not been for this group and their wisdom,

my husband would have died by now for the drs here did not know what to

do for him.

Darlene in SC

[Guest guest]

You are very welcome . Any information we can learn about this

dreaded disease is helpful. I only met my husband in 1998. We had not

been together long before he started getting " sick " . He was not very fit

when we met. But we were pretty active. We were always going somewhere

or doing something. We loved to fish and go camping and went to the

beach any chance we got. We even went white water rafting one time. He

was diabetic and had high blood pressure that he did not control. He

more than likely starting showing symptoms in 2005 when he was dx as

having a stroke. We later found out that he hadn't had a stroke. But he

kinda started going down hill from there. In 2006 the drs found out he

was in the end stage of renal failure and so every symptom he had they

said it was caused from his kidney failing. I didn't think so but they

wouldn't test him for anything else. They said once he got his kidney

transplant he would be fine. In July of 2008 he got his transplant and

of course he didn't get better. In Nov of 2008 he went to a neuro who dx

him with PD. Then in 2009 another neuro dx him LBD and put him in the

hospital for over night test. He came out three months later. He

developed e-coil while in the hospital that turned sepsis. They gave him

a 50-50 chance of surviving. We weighed 268 lbs when he was admitted.

When he came home he weighed 209 lbs. Right now he is on Aricept,

Namenda, Seroquel, Trazodone and Depakote for his many symptoms. He also

takes Sinemet for the parkinsonism. The main problem we have now is with

his autonomic system. His heart rate will fall into the 30's sometimes.

It doesn't stay there but it really scares me when it does that. He BP

is all over the place and he stays cold all the time. I am so glad your

husband is still active. And very fit. I really believe that plays a big

part in this disease. With your husband you said it was mainly his

mental abilities that were diminishing, with mine it is his physical

abilities although sometimes his mind is way out in left field. His

speech therapist once said that any type of memory game can help keep

the mind a little sharper. She used to play little mind games on her

computer with my husband and he would do very well sometimes. He is to

far along now for that to work. The dr won't even recommend therapy for

him anymore. But maybe your hubby could benefit from it. This is a trial

and error disease for sure. If one thing won't work then try another. If

something doesn't work this week, it might work the next week. It is a

long and hard journey. My heart and prayers go out to you as you travel

the path of Lewy. If I can be of any help in any way, please let me

know. You are in good hands with this group. I would be lost without it.

Darlene from SC

>

> Thank you, Darlene. I've been wanting to compare notes with someone

dealing with this in my husband's age group. My husband was dx with PD

in 2009 and just dx with LBD a few weeks ago. He was also 56 with his

initial dx, however, we spent a year going to doctors before his dx

because no one knew what was wrong. My husband is very fit. He runs 6

miles a week and lifts weights etc. Physically, he has not really

declined, but mentally it seems to be progressing rapidly. He recently

started Exelon and we've seen some improvement, but not much. Was your

husband fit at the time of dx? Is he on Exelon or something similar?

Anything you'd like to share would be greatly appreciated.

> Â

> C

[Guest guest]

My husband will be 66 in a couple of weeks. We have been working on this

since 2003, and 3 neurologists later, finally got a dx of LBD, which fits

him much better than PD. 1st neuro said " nothing going on " 2nd neuro dx as

PD after running about 6 different tests and felt comfortable with PD. It

helped, but after 2 years and not getting better, his family dr sent him to

Cleve Clinic and received dx of LBD.

Vivian

On Sat, Dec 31, 2011 at 12:32 PM, darlene31701

wrote:

> **

>

>

>

> You are very welcome . Any information we can learn about this

> dreaded disease is helpful. I only met my husband in 1998. We had not

> been together long before he started getting " sick " . He was not very fit

> when we met. But we were pretty active. We were always going somewhere

> or doing something. We loved to fish and go camping and went to the

> beach any chance we got. We even went white water rafting one time. He

> was diabetic and had high blood pressure that he did not control. He

> more than likely starting showing symptoms in 2005 when he was dx as

> having a stroke. We later found out that he hadn't had a stroke. But he

> kinda started going down hill from there. In 2006 the drs found out he

> was in the end stage of renal failure and so every symptom he had they

> said it was caused from his kidney failing. I didn't think so but they

> wouldn't test him for anything else. They said once he got his kidney

> transplant he would be fine. In July of 2008 he got his transplant and

> of course he didn't get better. In Nov of 2008 he went to a neuro who dx

> him with PD. Then in 2009 another neuro dx him LBD and put him in the

> hospital for over night test. He came out three months later. He

> developed e-coil while in the hospital that turned sepsis. They gave him

> a 50-50 chance of surviving. We weighed 268 lbs when he was admitted.

> When he came home he weighed 209 lbs. Right now he is on Aricept,

> Namenda, Seroquel, Trazodone and Depakote for his many symptoms. He also

> takes Sinemet for the parkinsonism. The main problem we have now is with

> his autonomic system. His heart rate will fall into the 30's sometimes.

> It doesn't stay there but it really scares me when it does that. He BP

> is all over the place and he stays cold all the time. I am so glad your

> husband is still active. And very fit. I really believe that plays a big

> part in this disease. With your husband you said it was mainly his

> mental abilities that were diminishing, with mine it is his physical

> abilities although sometimes his mind is way out in left field. His

> speech therapist once said that any type of memory game can help keep

> the mind a little sharper. She used to play little mind games on her

> computer with my husband and he would do very well sometimes. He is to

> far along now for that to work. The dr won't even recommend therapy for

> him anymore. But maybe your hubby could benefit from it. This is a trial

> and error disease for sure. If one thing won't work then try another. If

> something doesn't work this week, it might work the next week. It is a

> long and hard journey. My heart and prayers go out to you as you travel

> the path of Lewy. If I can be of any help in any way, please let me

> know. You are in good hands with this group. I would be lost without it.

>

> Darlene from SC

>

>

> >

> > Thank you, Darlene. I've been wanting to compare notes with someone

> dealing with this in my husband's age group. My husband was dx with PD

> in 2009 and just dx with LBD a few weeks ago. He was also 56 with his

> initial dx, however, we spent a year going to doctors before his dx

> because no one knew what was wrong. My husband is very fit. He runs 6

> miles a week and lifts weights etc. Physically, he has not really

> declined, but mentally it seems to be progressing rapidly. He recently

> started Exelon and we've seen some improvement, but not much. Was your

> husband fit at the time of dx? Is he on Exelon or something similar?

> Anything you'd like to share would be greatly appreciated.

> > Â

> > C

>

>

>